Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Patients Say Fibromyalgia Drugs Make Things Worse, Rest is Best

Discussion in 'Fibromyalgia' started by heapsreal, Aug 30, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    Im pinching this from another ME/cfs site so hopefully know one minds but i thought was interesting.

    August 10th, 2011 Alexandra Carmichael Posted in Infographics, Research Findings | 20 Comments

    For the live-updated, interactive version of this infographic, click here.

    The FDA has approved three drugs for Fibromyalgia, a condition of widespread pain and fatigue that affects 2-4% of the population. The three drugs are Lyrica, Cymbalta, and Savella. At CureTogether, 1,144 patients with Fibromyalgia came together to rate these drugs, among other treatments.

    We were surprised to find that patients rate Lyrica, Cymbalta, and Savella as making their Fibromyalgia worse, not better (see the red part of the chart above.)

    The treatments that help most, in the top right corner of the chart, are simple lifestyle changes: rest, heat, sleep, stress reduction.

    While this is just one study, it suggests that the relative cost (financial and physical pain) of administering FDA-approved Fibromyalgia drugs compared to free, easy lifestyle changes should be considered when choosing a treatment for Fibromyalgia.

    The rest of the results are in the graph above, which is divided into four squares

    - Top right: the most popular and effective treatments (including Rest and Heat)

    - Top left: effective treatments that not many people have tried, so they may be options to think about (including LDN and Hydrotherapy)

    - Lower right: very popular but not very effective (including Lyrica and Cymbalta)

    - Lower left: neither popular nor effective (including Savella and Effexor)

    Where did this data come from? This is the result of a 3-year CureTogether study on Fibromyalgia. To thank everyone for participating, were publishing this study openly and freely.

    This is part of our regular series of research findings. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are patient-reported data to stimulate discussion and generate new insights for further research.

    To see the chart heres a link,9164.0.html
  2. jimells

    jimells Senior Member

    northern Maine
    I would've been surprised if the study reported that patients received a benefit from Cymbalta. It's too dangerous to be handing it out like candy. Many people have reported severe reactions to it. It has killed a number of people:

    It caused my BP to go to 240/130 and triggered the worst headache of my life. It was pain level 10, felt like an ice pick stabbing into my left temple, over and over, for hours and hours. I suspected the Cymbalta and immediately cut the dose way down and went off it as soon as I dared. As usual, the doctor denied that Cymbalta could cause such a reaction. Fortunately I didn't believe him.
  3. richvank

    richvank Senior Member

    Hi, all.

    Note that on the treatment ratings, LDN (low-dose naltrexone) ranks highest of all for fibromyalgia. There were no reports that it made people worse. Note that LDN is also the highest ranked actual treatment (i.e., not including lifestyle changes) for CFS on the treatment ranking. There are a small number of negative reports on it there.

    On the CFS rankings, the methylation treatments rank fourth among the actual treatments there, behind LDN, T3, and yeast treatments, in that order.

    Best regards,

  4. richvank

    richvank Senior Member

    Hi, all.

    For more insight on the FDA's approval of new drugs, check out this youtube interview with Johathan Emord:

    Best regards,

  5. drex13

    drex13 Senior Member

    Columbus, Ohio

    Cymbalta also gave me a severe headache. It felt like someone was sticking a large needle (or to borrow your description, an ice pick) in the top of my head. My doctor said to stop taking it immediately.
  6. *GG*

    *GG* senior member

    Concord, NH
    Can someone get this graph? I don't have the time or energy to join another forum!

  7. SickOfSickness

    SickOfSickness Senior Member

    Good info. Like GG, I would like to see the graph without joining.
  8. merylg

    merylg Senior Member

    Sydney, NSW, Australia
    Cymbalta helped my fibromyalgia, but I almost died after taking it! It affected my gut in such a way that I got a severe gastroenteritis infection; severe gut pain, profuse and rapidly dehydrating, uncontrollable diarrhoea and vomiting. I collapsed in the shower, needed an ambulance (who could not find a blood pressure) to hospital and overnight rehydration, plus weeks of recovery at home.
  9. Vanessa_M


    British Columbia
    Hmmm interesting. It seems like a lot of GP's are quick to recommend various new antidepressants to help with fibromyalgia, and I've been skeptical about this.

    I can report that I experienced major benefit from taking Amytriptaline for one year, one of the older school tricyclics. I completely recovered from pain, and it is not because it improved my mood or anything. The drug made it very difficult for me to wake up in the morning for the first few months so I recovered a massive sleep debt. I was getting 2-3 extra hours of sleep, above my norm every night. My pain eventually subsided completely, and then I eventually came off of the drug. So the rest theory I can definitely agree with, but a drug did help too.

    My experience with SSRI's on the other hand, is that they can actually cause insomnia to get worse in some people.
  10. eric_gladiator

    eric_gladiator Senior Member

    Cymbalta is a medication that should be prohibited, in my case I triggered symptoms that I had never had and this alone with a take of 2 pills!

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